Focus group methodology: some ethical challenges

Consent is a central ethical concern in research using human participants. Its specific importance in focus group research is suggested by Green and Hart’s view of this method as one in which participants have a particular vulnerability, as they ‘are not only persuaded by skilled facilitators to disclose intimate views, but also to do this in front of peers’ (Green and Hart 1999: p. 31).

There are two models of consent: the mental model of consent sees it as the mental state of the person consenting, whereas the performative model sees it as the public act whereby such consent is communicated (Schnüriger 2018). On either interpretation, consent serves to legitimize the researcher’s actions. Hence, Walker (2018: p. 131) takes consent to be a form of communication whereby ‘an act that would have been impermissible for some reason is no longer impermissible for that reason.’

The underlying moral ground of consent is centred primarily in the notion of autonomy, on the basis that the consent process can be seen as a means of protecting and supporting autonomous decision making on the part of the research participant (Faden and Beauchamp 1986; Beauchamp 2009). Additionally, it is supported by the associated principle of respect for persons, which requires one not to use a person merely as a means to an end (Downie and Telfer 1969). Consent may be seen as having four essential elements: disclosure (the adequacy of the information given by the researcher); comprehension (the extent to which this information is understood by the participant); competence (the participant’s cognitive or emotional capacity to give or withhold agreement); and voluntariness (the absence of inducement of coercion). Fulfilment of each of these elements is necessary for informed consent to carry its intended moral force (Sim 2010).

Lack of information—i.e., inadequate disclosure—is a constraint upon autonomous decision making (Beauchamp 1997). The onus is therefore on the researcher to provide a suitable type and quantity of information as a basis for the participant’s choice. In interview-based studies, such information usually states the purpose of the study, gives an outline of the topic(s) to be covered, indicates the way in which the interview will be conducted and how long it is likely to last, draws attention to any potential benefits or risks associated with taking part, and describes what will be done with the data collected. Using the details provided, the participant should be able to foresee or imagine the situation to which he or she is consenting—therefore, the process is perhaps better seen as creating (or perhaps modifying) certain expectations in the mind of the participant rather than as simply the conveying of information. Such expectations will be formed by the manner and context in which information is communicated, and not just by the factual content of this information, and it is therefore more appropriate to think in terms of the message received in the consent process than in terms of the message sent.

Confidentiality and anonymity are often treated more or less synonymously.⁵ There are, however, important distinctions that can be drawn between these two concepts, and the related notion of privacy. Confidentiality relates to what is done with information once it is in the researcher’s possession, and specifically the extent to which it is disclosed to others. Anonymity, in contrast, is concerned with the attribution of information—can individuals be identified from the data that they provide or from other information relating to them? The fact that some individuals might be concerned about the disclosure of certain information even if they saw no possibility of its being attributed to them—or conversely, that they might not wish their identity as a participant to be disclosed even if no other information relating to them were revealed—demonstrates that confidentiality and anonymity are not equivalent. Whilst confidentiality and anonymity refer to the use and attribution of information, respectively, privacy has to do with initial access to information, and therefore comes into play before considerations of confidentiality and anonymity arise.⁶

As regards data, an assurance can be provided these will be reported anonymously, but if data are declared confidential this would seem to preclude their being directly reported in the form of quotations. Assurances of confidentiality in relation specifically to data are not therefore meaningful (unless anonymity is simply re-expressed in terms of the confidentiality of any identifying information). In terms of information other than data, such as information about the context of the study or biographical details relating to participants, both anonymity and confidentiality are feasible, as such information may either be presented in a form that preserves anonymity, or may not be disclosed at all (particularly if any such disclosure would be hard without thereby breaching anonymity). An important relationship between confidentiality and anonymity is that confidentiality is of greatest concern if anonymity cannot be assured.

The focus group is such that issues of confidentiality and anonymity are acute, especially when the discussion concerns sensitive topics:

The nature of the group setting is such that participants are obliged to express in public what they usually regard as private, and neither the reaction nor the discretion of the group can necessarily be predicted. (Wellings et al. 2000: p. 256)

Although in some respects focus groups offer a supportive environment to participants, the group context may also create a sense of public vulnerability:

In individual interviews respondents are protected by the relative intimacy and privacy of the interview situation. In a focus group session, in contrast, respondents are under pressure to perform (and possibly to conform) under the scrutiny of fellow participants. (Ransome 2013: p. 41)

This form of vulnerability may expose participants to various forms of harm. Thus, social or psychological harm may arise through a breach of confidentiality and/or anonymity. Information that is disclosed may lead to embarrassment, shame, stigmatization, discrimination, disruption of existing social relationships, or adverse employment consequences, and in some cases, participants may face legal action as a result of information that is made public (Warwick 1982).

However, harm may potentially arise in other ways than through breaches of confidentiality or anonymity. For example, as noted earlier, participants may mistake a focus group that aims to explore a particular problem for one that seeks to solve such a problem, with the result that unfulfillable hopes are raised and subsequently disappointed. Alternatively, the discussion of particularly sensitive issues within the group context may cause distress or embarrassment. In some situations, such feelings may be directly associated with the topic—such as in a focus group centred on issues to do with sexual behaviour—and may therefore be anticipated. Participants may therefore be considered to have foreseen this possibility when providing consent. Furthermore, as such feelings are likely to result from any discussion of the topic in question, the fact that such discussion occurs within a research context may not raise special concerns. In other instances, however, owing to the way in which the discussion evolves spontaneously, participants may experience distress or embarrassment that they did not predict. The researcher needs to judge whether this is excessive or inappropriate. It is also important to note, however, that focus group discussions can provide a very supportive forum in which participants can express their emotions or anxieties, and thereby have a beneficial rather than a harmful effect. Thus, Ybarra et al. (2014) found that the use of online focus groups conducted with gay and bisexual adolescents on the topic of HIV prevention led to reduced feelings of isolation and a greater sense of support regarding decisions that some participants had made regarding abstinence. Again, the researcher needs to think carefully about the likely effects on the participants in the group.

Krueger and Casey (2009: p. xiii) maintain that focus group interviewing is ‘about paying attention, being open to what people have to say and being nonjudgmental.’ However, if participants express racist or other discriminatory views, the researcher should consider whether allowing such views to go unchallenged suggests complicity (Longhurst 2016). In a one-to-one interview such apparent acquiescence on the part of the researcher may reinforce the views of the individual concerned, but in a focus group it may additionally be construed as some form of public endorsement. In a similar way, harm may arise due to the expression of inaccurate information by a member of the group. The researcher may feel impelled to step out of the researcher role and intervene, or at least address the issue subsequently in a debrief. Hyde et al. (2005) and Wellings et al. (2000), for example, talk of the difficulty in staying silent in the face of factually incorrect comments in focus group discussions on HIV, and Kitzinger and Barbour (1999: p. 17) argue that one should not ‘walk away from a group after having silently listened to people convincing each other that HIV can be transmitted by casual contact or that anal intercourse is safer than vaginal intercourse.’

There are two general approaches that the moderator can take in order to avoid or counteract discomfort or distress that may arise from the discussion of sensitive issues: (1) to seek to prevent such issues from arising in the first place, either by declaring them to be ‘off limits’ at the outset, or by averting them by steering the discussion in another direction; and (2) to try to minimize their impact when and if they do arise. The first of these approaches may seem an attractive solution. However, the issues concerned may be integral to the topic of the focus group, and avoiding them at the outset may, at least partly, frustrate the purpose of the research. Additionally, a strategy of avoidance may have the effect of denying certain individuals’ participation. In discussing focus group research in areas related to sexuality, Kitzinger and Farquhar (1999) suggest that excluding discussion of sexual abuse, and failing to frame any questions on this topic, may marginalize participants who have had such experiences and convey an assumption that nobody could conceivably wish to discuss such issues in a public forum. In a similar way, Kleiber (2004: p. 93) maintains that ‘it is important for the moderator to establish that no opinion or perspective is unacceptable’ and Morgan (1992: p. 185) describes how the moderator can ‘validate the expression of differences within the group.’ The strategy proposed by Kitzinger and Farquhar (1999: p. 170) is that focus group moderators should try to ensure that discussion of sensitive issues is kept at an appropriate level, and ‘should avoid using their power within the research setting either to close off sensitive possibilities or to push them too far.’ Thus, a desire to avoid distress within focus groups—either by foreclosing certain topics at the beginning or by diverting the discussion when an issue arises—should be balanced against the risk of disenfranchising particular categories of individuals or censoring certain views as unacceptable.

The second approach—dealing with potential distress as it arises—relies on a prompt response on the part of the moderator. Owen (2001: p. 657) provides an example from her research on women’s mental health problems:

Whilst the women were permitted to discuss their painful and emotional experiences, the discussion was moved on if it was evident that the women were becoming distressed. As far as possible this was done sensitively by waiting for a suitable break in the self disclosure, openly acknowledging the woman’s contribution, and posing another question to the group. More general questions were usually introduced at the end of each group in an attempt to lighten the atmosphere.

In some instances, distress can be prevented at an earlier stage, by managing the composition of the group. Thus, Bloor et al. (2001: p. 35) advise avoiding groups made up of ‘individuals with such conflicting views that the resultant discussion might cause distress to individual members.’ It would, however, be important to balance this strategy against the need to obtain whatever range of views is important for the aims of the research.

There are a number of ways in which the potentially problematic issues outlined hitherto can be avoided or mitigated, and some have already been touched upon. These strategies will be explored further in relation to the consent process, briefing prior to the focus group, the conduct and moderation of the focus group, and debriefing after the focus group.

The consent process: If the researcher provides information with a suitable level of detail and with due clarity, in principle this will help focus group participants to frame appropriate expectations of what will occur during the discussion. The purpose of the focus group can be explained and examples given of the sorts of questions that will be asked. Clarification can also be provided on what will be done with the data to be collected and the steps to be taken to preserve confidentiality and/or anonymity. Thus, certain assurances can be given, though these can strictly only relate to those aspects of the focus group over which the researcher has a degree of influence (Carey and Asbury 2012). Morgan (1998) and Tolich (2009) provide suggested content for informed consent documentation.

Briefing: In addition to giving information in advance of a focus group, researchers normally discuss and negotiate a set of ground rules immediately prior to starting the discussion (Kevern and Webb 2001; Kleiber 2004; Breen 2006), especially in the case of sensitive topics (Farquhar 1999)—though Krueger (1998: p. 23) suggests that using a less formal term than ‘ground rules’ may be helpful so as not to stifle discussion. The researcher can emphasize the public nature of a focus group and the need for confidentiality and anonymity, and provide guidance on subjects that might be felt unsuitable to be raised during the discussion, subject to the caveats discussed earlier. The briefing also allows participants’ expectations of the group to be managed, for example by pointing out that the group seeks to discuss a particular health or social problem, not to provide a solution to such a problem. Importantly, the collective nature of the briefing allows the individual to reflect on his or her decision to take part in a situation that is closer than the formal consent process to the context of such participation. Furthermore, if at this point a participant has reconsidered the decision to take part in the study, the briefing can create an opportunity to withdraw less obtrusively than once the discussion has begun.

Conduct of the focus group: Although the moderator’s influence over what happens in a focus group may be limited, he or she can nonetheless try to ensure that all members of the group have an opportunity to contribute to the discussion, without being under pressure to do so if unwilling, and that one or more individuals do not dominate the group. Additionally, the moderator can be alert to distress, breaches of confidentiality, or over-disclosure, and seek to turn the discussion in another direction if appropriate.¹⁷ If sensitive or emotionally difficult topics have been discussed, it may be helpful to finish the discussion on a more neutral or positive note (Finch and Lewis 2003; Briller et al. 2007–8). It is also important to ensure, when discussion of such sensitive topics is intended or anticipated, that the moderator can respond appropriately. Even if not qualified to provide psychological therapy, the moderator can offer emotional support (Rosenblatt 1995), and can take appropriate steps to ensure prompt access to qualified therapy through clinical referral (Carey and Asbury 2012).

Debriefing: After the focus group has finished, and its content summarized to participants, the moderator can reiterate key messages around confidentiality and anonymity, and clarify or comment upon any potentially sensitive or problematic issues that were raised during the discussion, where it was not appropriate to do so at the time. Participants can also be invited to discuss their reactions to such issues (Smith 1995). The moderator can stay in the room for a while at the end of the focus group, or otherwise make him- or herself available, to give individual participants the opportunity to address any issues or concerns (Bloor et al. 2001; Sherriff et al. 2014).

The first two of the above approaches—the process of obtaining consent and the briefing prior to the discussion—are means of providing information and giving certain assurances as to what is and what is not intended or foreseen. Martin Tolich, however, is pessimistic regarding the researcher’s ability to provide assurances to focus group participants:

…let the researcher, the participants and the ethics committee beware that the only ethical assurance that can be given to focus group participants is that there are few ethical assurances. (Tolich 2009: p. 99)

He acknowledges the role of the moderator, but suggests that one should not rely unduly on the moderator’s skill in controlling the group, and has similar reservations regarding the use of ground rules or a debriefing session. Instead, Tolich’s central strategy is one of ‘caveat emptor’:

Taking part in focus groups involves risk and the participants’ [sic] must have these risks identified for them, explicitly, and then be willing to absorb those risks. (Tolich 2009: p. 106)¹⁸

In Tolich’s approach to the ethics of focus groups, the principal emphasis is accordingly on the quality of the consent process and participants’ autonomous assumption of certain risks, rather than on measures to mitigate ethical problems as they arise:

Ethical assurances, rather than safety techniques, should be at the fore. These assurances should be communicated to the potential participant in the recruitment phase of the research with such transparency that they allow the research participant to read in advance how the researcher plans to contend with the two endemic ethical flaws [relating to confidentiality and consent] in focus group research. Transparency is manifest in both an explicit description of the endemic flaws and an honest statement on the limitations of any ethical assurances. (Tolich 2009: p. 106)

On this basis, Tolich provides detailed suggestions as to the information that should be included in an informed consent form, building on earlier suggestions by Morgan (1998).

However, as a general strategy, it may be unwise to rely so heavily on the consent process as a means of addressing ethical challenges in focus groups. First, as an empirical issue, providing information to participants as part of the consent process is only of value if this information is understood and recalled, and if it creates appropriate expectations of what will take place in the focus group. However, as noted earlier, the specific issues that are discussed in a focus group, and the way in which participants interact and behave during the discussion, are to a large degree unpredictable, and participants’ expectations based on prior information may not be realized. Moreover, whilst its generalizability to social research may be questioned, evidence from the medical literature of poor recall and comprehension of consent information may caution us against over-reliance on some aspects of the consent process (Corrigan 2003; Dawson 2009). Second, at a more philosophical level, whilst consent may be a necessary condition for involving an individual in a study, it is not a sufficient condition—the researcher’s moral responsibility does not end with ensuring that participants make an informed and autonomous choice as regards participation. The focus group participant may well consent to the possibility of distress during the discussion or the risk of a breach of confidentiality, but there are separate obligations on the part of the researcher—based on an independent notion of non-maleficence—to mitigate such risks as the discussion takes place. If these obligations are not discharged, the involvement of the participant may be morally unjustified, regardless of the apparent quality of the consent process.

A more effective approach, perhaps, is to enlist all four of the strategies outlined above in approximately equal measure, so that one strategy may reinforce, or compensate for, another in a synergistic manner. In this way, the pre-discussion briefing can reiterate and re-emphasize information given in an information sheet as part of the consent process, and address any questions that may have subsequently arisen in participants’ minds. The briefing can also raise issues regarding the conduct of the group—including ground rules—that might be less effectively conveyed by an information sheet. Moreover, such ground rules may be more effective if mutually negotiated by the group, rather than being stated in the consent documentation. Similarly, raising such issues at the level of the group, as opposed to when raised at an individual level in the consent process, may place them more clearly in the context to which they apply.

The process of moderation can attempt to deal with sensitive and potentially distressing issues that arise—perhaps unpredictably—through the dynamics of the interaction within the focus group. For example, Owen (2001) relates an incident in which a woman unexpectedly gave an account of her partner’s suicide and her feelings of loss and betrayal, and Seymour et al. (2002: p. 523) relate an incident in a focus group on end-of-life care where a woman stated ‘I’ve done euthanasia’—in both cases the moderator felt the need to take action to deal with the situation. If appropriate, at certain junctures in the discussion the moderator can also give reminders of matters of confidentiality outlined in the consent documentation and encourage observance of agreed ground rules. Finally, a debriefing after the group discussion can not only reinforce elements within each of the previous strategies, but may also provide an opportunity for individual participants to raise concerns that may have been difficult to address during the group discussion.